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MEP Johan Van Hecke visits IF project

Dr. John Mugamba explains ETV to Mr Van Hecke Johan Van Hecke, Belgian MEP and Africa-expert of the European Parliament visited the IF-project in Mbale, Uganda on Wednesday 27 July 2008. He was accompanied by Mrs Benedicte Bouve, spouse of the Belgian Embassador and Lieven Bauwens, IF coordinator. Health is one of Belgium's priorities in the cooperation with Uganda and will probably remain so for the future. Mr. Van Hecke was impressed by the project and the expertise built up over the years, by the center and its chief surgeon Dr. John Mugamba. Mrs Bouve concluded: "this is an example project."

Looking back on IF's 19th International Conference

IF President Pierre Mertens at the "Smile conference" IF's 19th International Conference was well attended and a great success. We are very pleased to be able to share with you the summary report written by IF volunteer Annie Van Tienen. Annie has done a great job capturing the atmosphere and essence of the conference. She describes academic sessions, the impressive performance of "Dancing with a difference" and more. Also, artist and photographer Zjuul Devens has made 498 images available to us. Both the summary report and the photographs can be found at the conference weblog. Images at a higher resolution can be ordered by contacting Zjuul Devens.

SBA conference "Building a brighter tomorrow"

Read about the SBA conference on IF's conference weblog The most impressive annual Spina Bifida conference is the one that is organized in the United States by the Spina Bifida Association of America (SBA). This year's conference was held in Tucson, Arizona. It had sessions from 22 June to 25 June. Children and adults with Spina Bifida, their families, physicians, nurses, and other clinicians had the unique opportunity to gain information on the latest medical care and network on various issues that affect their lives and professions. Lieven Bauwens was at the conference and reported on it on our conference blog in order to share impressions for those who, regrettably, weren't able to attend.

PACER Center - Champions for children with disabilities

The PACER website offers useful information for families of children with all disabilities Through our network, IF received news about the PACER Center website. PACER Center is a parent training and information center for families of children and youth with all disabilities from birth through 21 years old. Located in Minneapolis, it serves families across the nation, as well as those in Minnesota. PACER offers more than 30 programs for parents, students, professionals and other parent organizations, yet the original philosophy of "parents helping parents" remains the foundation upon which PACER has grown. Parents can find publications, workshops, and other resources to help make decisions about education, vocational training, employment, and other services for their children with disabilities.

Benefits of flour fortification in South Africa

Significant decline in Spina Bifida in South AFrica following Folic Acid fortification A recent study published in the international journal Birth Defects Research shows the South African government's food fortification programme has led to a 40% decline in spina bifida. In October 2003 South Africa embarked on a program of Folic Acid fortification of staple foods. The study shows a significant decline in the prevalence of Neural Tube Defects following Folic Acid fortification in South Africa. Before the food fortification programme began, an estimated 970 babies were born each year with Spina Bifida, and the addition of Folic Acid to staple foods saw that figure drop to about 570. Mandatory fortification of maize and wheat flour has been the largest contributor to the decline in Spina Bifida.

IF Award 2008 for Dr Rob de Jong

Dr Rob de Jong receives the IF Award 2008 at the 19th IF World Conference This year’s IF award is given to Dr Rob de Jong, paediatric neurosurgeon, on account of his scientific contributions concerning the debate on active euthanasia and his critical comments and publications on this issue. He has published a scientific paper covering pain and unbearable suffering by babies with Spina Bifida. His thesis: children with Spina Bifida are not suffering unbearably and pain can be managed. He has researched the issue of pain in newborns with Spina Bifida, concluding that when the baby suffers from pain, it can be alleviated easily. The criteria used in the Groningen protocol are incorrect, it is incompatible with human rights and it is unclear in whose interest these decisions are.

First ETV operation at Hue Hospital, Vietnam

Dr Nguyen during his training in Uganda On the 9th of June IF received great news from Dr Phan Binh Nguyen. That morning he performed his first Endoscopic Third Ventriculostomy (ETV) with the equipment that was provided by IF and Handicap International (HI). The operation was difficult, but went very well. Dr Nguyen is very grateful to everyone who made this operation possible and also expresses his thanks to HI Vietnam, who are still offering him great support. Now he has to follow up on his first patient and next week 2 new patients are scheduled for an ETV.

Endoscope installation in Vietnam

Dr. Nguyen with the new endoscope © Kim Lien for Handicap International Early 2008 two Vietnamese surgeons, Dr. Nguyen en Dr. Minh, were trained by Dr. Ben Warf and Dr. John Mugamba in Cure Children's Hospital in Mbale, Uganda. After their training they were able to perform an Endoscopic Third Ventriculostomy, an advanced treatment of Hydrocephalus. The equipment needed for this type of surgery has been provided by IF and Handicap International, aided by a gift from the Belgium National Lottery. Just recently two Storz endoscopes have been placed in hospitals in Vietnam (see photos). The first operation at Hue Hospital will be performed in June.

Visting the Mukisa Foundation

Meeting parents and their children with Spina Bifida and Hydrocephalus On May 30, the IF staff in Uganda, Rebecca and Olivia, with Femke from AVSI visited the Mukisa Foundation (Mukisa means "blessing") in Lungujja on the outskirts of Kampala. Mukisa was founded in 2006 to educate and support families with children with special needs. They met several parents with children with Spina Bifida and Hycrocephalus and one father with an albino child with Hydrocephalus. The parents have been to the IF project Cure Children's Hospital for treatment and are now receiving rehabilitation from Mukisa. Rebecca and Olivia were invited by the management for their workshop to talk to the mothers about Hydrocephalus and Spina Bifida in July 2008.

Join the IF international ListServ

Share information through the IF ListServ IF proudly announces the start of an international ListServ, an eCommunity for adults with Spina Bifida and/or Hydrocephalus (SB/H) from all over the world. By using the ListServ you will be able to share information, exchange ideas and advise IF on any issue relevant to adults with SB/H. The IF international ListServ is funded by an unrestricted educational grant from Pfizer. We are very grateful for their support. Many thanks also to the Spina Bifida Association of America (SBA) who created and hosts the ListServ for us and who continue to support us. Read more about how to join the ListServ here.

World Congress on Spina Bifida Research and Care

"The Future is now", March 15-18, 2009, Orlando, Florida (USA) The Spina Bifida Association (SBA) is pleased to announce its World Congress on Spina Bifida Research and Care. This meeting promises to be the premier forum for a unique gathering of international Spina Bifida researchers and care specialists. International leaders in the medical and scientific community from the fields of neurosurgery, neurology, urology, developmental pediatrics, orthopedics, epidemiology, and other arenas will come together to discuss the future of care for this challenging and complex birth defect. Don’t miss your chance to be a part of this amazing event… the future is now. More information about registering or submitting abstracts can be found here.

Conference "Accanto alla vita. Nel mondo" in Italy

IF has participated in a conference about international solidarity in Milan, Italy, 23-24 May 2008 IF took part in the conference "Accanto alla vita. Nel mondo" organized by the Foundation Don C. Gnocchi ONLUS in Milan (Italy) on 23-24 May 2008. Theme of the conference was international solidarity. It was an occasion to remember the founder Don Carlo Gnocchi and to reflect about the life conditions of disabled people, ill people, minors in difficulties, victims of war and of violence in development countries. In particular, IF took part in the workshop “Disability and social discomfort” moderated by Marco Sala, general director “Associazione La Nostra Famiglia”. Some important guests were: Letizia Moratti, mayor of Milan, Roberto Formigoni, president of Lombardia Region, senator Giulio Andreotti, Mario Mauro, member of European Parliament, and Angelo Bazzari, the president of Foundation Don C. Gnocchi.

Clinic day at Katalemwa Cheshire Home, Uganda

Katalemwa Cheshire Home organises clinic day for children with Spina Bifida and/or Hydrocephalus On 23 May 2008, Rebecca Nakitto, IF administrative coordinator in Uganda, attended the clinic day for children with Spina Bifida and/or Hydrocephalus at Katalemwa Cheshire Home in Kampala, Uganda. Children from four months onwards were examined by doctors, physiotherapists and social workers from Cure Children's Hospital, Mbale. Parents came from various places, referred by Cure Hospital. Some came from Sudan, others from northern Uganda, some from villages, others from Kampala. While waiting in the queues, parents shared experiences with Rebecca and asked many questions. They encouraged IF to continue to reach out to people in the villages and inform them about Spina Bifida and Hydrocephalus.

Putting words into action

EU conference about UN Convention on the Rights of People with Disabilities During its turn of European Presidency Slovenia organised a conference on the ratification and implementation of the UN Convention on the Rights of Persons with Disabilities. The conference looked for strategies and tools to put words into action. In Ljubljana the European Disability Forum (EDF) held its Board and General meetings, with important discussions about recognition of the rights of girls and women with a disability, the relationship between disability and poverty, and legislation on supporting decision-making for persons with learning disabilities. IF was represented by its president Pierre Mertens who acts as EDF board member. Related documents can be found at the EDF website. Read more here.